Potential - Day 188

I have always had a great affinity for the concept of 'Potential'.  I remember my high school chemistry teacher's lesson on potential energy where she pointed to the ceiling and the thin air above where her imaginative "pet boulder" hung ready to fall yet amazingly it still clung to its ropes for the time being realizing its own potential only upon falling.  Potential is what could be.  It represents ambition and an ideal work ethic to seek out life's goals and adventures.  The irony is that it is never fully attainable.  Potential exists to show us what is possible and what we can shoot for.  The idea of what's ahead if we put in the work now has always been a driving force for me.  Being human denies the ability to be perfect.  And rightly so.  If we were perfect, how would we progress?  Its important to learn something new everyday and its essential to stumble as you do only then to have the ability to pick yourself up better than before.   I wonder where I would be if I stopped believing in what's possible.  Seeking to fulfill potential opens up enriching experiences and of course cultivates hope when little else is there.  I will always want today to be better than yesterday in some way, shape, or form.  If it isn't....then I will try that much harder tomorrow.

We have come to the end of our incredible 3+ week break from Ellie's treatment that follows the final hospital stay of Interim Maintenance.  I don't know how this worked out the way it did, but the three week window happened to be at the exact time of Christmas and New Years.  So, not only did we get to open gifts on Dec 25th, but we got to enjoy a happy daughter for the days afterwards which included bike rides, visits with grandparents, some intriguing yet hysterical twin to twin conversations, and even a surprise trip up to stay in the Fairmont Hotel's Presidential Suite on New Years Eve.  The recovery period has allowed her body to purge completely of the High Dose Methotrexate and recover her blood counts from the remnants of the 6MP she finished up on Dec 24th.  Time truly flies.  She has been in remission now for 5 months.

The goal is to be as strong as possible, health wise, for the next and final phase of front line treatment so aptly named - Delayed Intensification or "DI" for short.  We have been warned about this phase from the very beginning.  It is supposed to be the harshest treatment she will receive in the entire protocol with perhaps the slight exception of those horrible first few weeks we went through during Induction in early July.  The various doses and number of drug administrations is actually not that bad.  We go in once a week on an out patient basis for 8 weeks for either shots or drugs pushed through her port in short time spans.  But, her white blood cell count will likely go down to near zero and thus her energy will be sapped and the likelihood of getting a cold or infection will be very high.  We will probably return to the frequent blood transfusion rate we had during Aug and Sept for Consolidation.  For the initial three weeks, we also get back on the Dexamethasone (steroid) which causes large mood swings and huge appetites (remember our yogurt demand from summertime?!)

I don't think there really is such a thing as over-preparing.  The idea is to understand completely what's in front of you, ask enough questions to feel out what might happen every step of the way, and then take any and all steps to make this as painless as possible.  My players on the team often get more info than they ever really wanted to know regarding an opponent.  I know very well that 100% of it being retained is not going to happen.  The hope in my eyes is that if you can build up an opponent enough, once the game hits it is much easier to be in the thick of things and say to yourself that this wasn't as bad as you thought it would be OR that the preparations helped anticipate their every move and thus were quite effective.  It is a far better outcome than underestimating and being shocked once you are there.  Regardless, attention to detail is without question essential.  So, we're treating this DI phase very seriously.

She'll be receiving 8 different chemo drugs over the course of the 8 weeks.  We go in for labs tomorrow to qualify her for the expected start date of Tuesday (Jan 3rd).  Once she qualifies with ANC levels above 750 (she was at 590 on Friday so fingers crossed!), she'll get the first four weeks of chemo regardless of what her counts are after Tuesday.  She'll then need to qualify for the second 4 weeks at the mid point of the phase.  Tuesday she will have another LP procedure (Lumbar puncture) to receive the intrathecal Methotrextate injections as she has many times before.  We maintain a negative presence of Leukemia in her Central Nervous system and don't intend for one minute to let it start now.  The LP's are the weapon of choice, so to speak and do a great job.  She then receives a new drug, Doxorubicin through her port and our good "friend" Vincristine.  We'll start giving her steroids at home orally for weeks 1 and 3 of DI.  I will be sad to see her beautiful face puff up again as its been 5 months since we've had this particular drug, but she'll bravely take it no questions asked as she has always done.  Then, we will be on some serious lockdown for the months of January and February to keep the cold bugs away.

It is very difficult after a couple great holidays with happy kids to have to turn to reality and get back to clinic visits.  This extended break we've had has shown us a glimpse of what sort of potential the future holds when she finishes treatment.  Polly and I still get amazed at how she and Timmy are growing as kids do between ages 2 and 3.  Their vocabulary continues to expand exponentially and their ability to reason why things happen and where various excursions will take them is simply huge fun for us.  Timmy continually refers to himself in the 3rd person (in fact I think he believes persons 1 & 2 are firmly against all things Elmo and thus they are banished from any and all forms of conversation - remind me to thank Sir Elmo for grammatical challenges we will face later in life because of this)  :)  Ellie will then put him in check when he is being out of line by simply raising her index finger and sternly but eloquently saying, "timmMMEEE! Ah-No, No, NO!"  Forgive me if I have already mentioned this before, but we use the counting-to-10 rule when it is time for a particular toy to be given to the other sibling who is waiting their turn to play with it....and most times with either of them I don't even get to 5 before one hands it to the other willingly.  It does nothing for the volume factor sometimes between the two, but it is a small victory nonetheless that we haven't had to work very hard to achieve.  It is also another sign to me that if Ellie were to have to go through this battle without Timmy by her side, this would all be ten times worse.

2011 ended yesterday with Polly and I being able to stare out of the same window we peered out of for the first time as husband and wife on the night of our wedding.  Never in a million years thought we would be back in that room 23 floors up atop Nob Hill in the city, but as chance would have it, it happened....and this time the twins were snoozing 20 feet away while we did.  Some dreams realized and many more to come.  Polly counted that between both the kids this year, we spent 61 nights in the hospital.  That's unbelievable and it is unfair.  It was a year that I am glad is behind us and one that has shaped, whether we fully grasp it right now on Jan 1st or not, the potential of 2012.  I will do everything I can until I cannot move another muscle to make sure this year is better.  I don't have much say in the cancer world, but I do have the ability to support, the ability to reach out my hand, and the ability to progress through plain hard work.  At the end of DI, we will be done with front line treatment and enter into the Long Term Maintenance which we are told is where Ellie's world gets back to more normal standards.  So, there is a vast potential to be found and fulfilled as we enter this rough patch ahead but with a milestone in sight.  Coach Valvano said, "In order to know where you are going....you have to know where you are coming from".  I won't have too many fond memories of 2011 and I will note that it was a year that changed our lives forever.  BUT, it has also expanded our horizons and brought a perspective that I will never stop saying thank you for.

We appreciate your prayers in the weeks upcoming.  Today marks a new day and new beginning for a year that can have all the promise and potential a 2 year old deserves.  I am going to faithfully accept that to be the truth and jump right in....so let's go.  Delayed Intensification - here we come.